What should I ask at our Family Conference at the Memory Clinic?
So... I asked for a family conference with the Clinical Gerontologist at the Memory Clinic and my mom and I have an appointment this coming week. My dad is not attending per the request of the Gerontologist. I don't want to manipulate the situation, but what kinds of questions should I ask or stories should I relay that will show the true nature of things so the Gerontologist can be another voice of empathy, guidance, and wisdom to my mom?
A little bit of back-story: My dad was diagnosed with Alzheimers so we have been going to a Memory Clinic ran by a medical school. My dad tells everyone that the doctors and "everybody" are wrong and he doesn't have a memory issue. They currently live in an independent living facility that we were able to move them to last September. Our reasons were for safety and we were able to get my dad to say yes because the apartment had just been redone with new flooring, paint, etc. (he has always been an easy sell on the newest, best, top of the line). However, now, he hates it there and wants to move home. I do realize this is the dementia and always wanting to return to something that was "better" in our past. They do still own their home and it is right next door to mine. My dad really is no longer an independent individual. My mom is his primary care-taker and does everything for him that isn't hygiene ADLs which he can still manage on his own. The facility provides three meals per day, cleaning, activities, and all maintenance. My mom is starting to talk about moving home even though she knows it isn't a wise choice. I think she is tired of listening to him complain and of course she would rather be in her home. The responsibilities that she would be adding to herself (and my family) would be a lot. I don't want to take away my mom's autonomy. I have already resigned myself to the possibility of them moving home and the added responsibilities I will need to handle in caring for their needs. However, I am certain living at home will result in my mom having physical injuries due to my dad choosing to include her in dangerous maintenance projects because "I don't have alzheimer's and I know how to do these things." She will also experience significant mental and emotional drain due to the added responsibilities that will be back on her shoulders. I fear this will shorten her life by years.
I have written up some "clinical" type observations of my dad's state of mind. When I gave that to the movement specialist at our last neurology appointment, my mom made the comment, "Well I hope you aren't putting ideas in the doctor's head." She obviously is feeling manipulated by myself and my siblings. I want my mom to feel supported, not manipulated.
Has anyone else gone to a family conference like this? What types of discussion did you have? What did you share? What did you ask?
And then tell the doctor all of they ways in which the burdens would fall on your mom, being specific, many of which are hazardous, because of your father's inability to care for himself and to use common sense. Tell him that this would be an unsafe situation, and that you and your family refuse to be part of it if they return home, so they will have to hire help (which, I'm guessing, your father would object to)?
Think of it this way: it's unfair to put your mother in this situation because you agree to your father's demands that you artificially prop up his claims of self-sufficiency. She is the one who will be there with your father 24/7 and most harmed by the return back to their home.
Also, describe your father's negativity. Is he angry? Aggressive? Depressed? There are medications the doctor can prescribe to help with these.
Question really is, how do YOU want to live as your parents' health declines? Time for YOU to decide.
I've been family caregiver to my parents (now deceased), another relative, and my husband. Four times. I learned a bit late in the game that it COULD have boiled down to more of what I want, and less of what they want. Imagine that!
It's kind of you to want your mom to feel supported, but her feelings are owned by her. You're not responsible for how anyone feels. You can't make mom feel one way or another. If you try to do that, in itself that's manipulation. You do you based on what you know should happen - and let the chips fall where they may.
I wish you the best of luck as you navigate this unfamiliar territory!
Finding out what your mom's "line in the sand" is.
Will she change his soiled briefs?
Will she shower him?
Is she able to help him stand up from a chair, toilet or the bed?
At what point can she no longer care for him? And what then?
Is there a Memory Care section of the facility where they are? If so is the plan to move him there?
At what point can he no longer be left alone? Is the facility where they are also Assisted Living?
Do you have POA? or is your mom POA for your dad?
If no one is POA there is a good possibility that you or a sibling may have to be Guardian. (I do not think your mom would be an appropriate Guardian)
I also suggest that their house be sold. Several reasons.
They can not make plans to return home if it is no longer their home.
The money can be used for his care, and your moms also if she needs that later.
To keep your dad busy and give your mom a break is there a way he can spend some time in the MC area so that he is safe and mom can get away for a bit. Or if there is an Adult Day Program that he can participate in that would be another option.
Is dad a Veteran? If so check with the local Veterans Assistance Commission to find out if he would qualify for any services. this may help mom later as she may qualify for Aid and Attendance. (may be means based depending on his level of "Service Connected Disability")
Also one more thing....Is dad still driving?
If so find out if he can be evaluated or if he should no longer be driving at all. The evaluations are pretty intense and he may not even be a good candidate since he does not understand that he has a memory problem.
Then draft a list of questions and thoughts without any self-editing -- just sit down and write out everything from to-do list items to responsibility assumptions to just random "do you understand why I'm anxious?" questions that help you get your feelings out. I do these types of first drafts without taking my hands off the keyboard or even looking at the screen sometimes, and if there's time I'll come back to the document a few times to add more thoughts.
From this big ol' messy list, chop away at a copy of it to get it down to what questions you need addressed and section them out by who needs to answer them, how/when to ask them, etc. For instance, you may want to prepare a written statement that includes some of your observations, concerns, and questions to deliver to the gerontologist's office/team before the meeting. I did this and I know he read it right before we were brought back to meet him -- I think in this specialty, they're pretty accustomed to having multiple layers of communication like this.
You may also want a list of questions to prepare for your mom, your dad, spouse, siblings, etc. These may tend toward getting assumptions and boundaries spelled out and also convey your love and concern. Rather than "I hope you know I'm not going to ____" it can be, "I'm concerned about _______; can you let me know what your plan is about how that will happen after this move?"
It may also help for them to see some notes in print about what to expect from you, and these can be phrased as helpful rather than "don't expect me to ___!" For instance, if you have time to do 2 hrs research for them, pull together contacts for suggested professional movers, handyman, lawn care, how to use Uber, how to shift to having things delivered, etc. Let them know whether/how/when you can take them on errands or to appointments and provide alternatives so they start to understand the scope of this business of living under their current capacities and to what degree they can/cannot rely on others to take it on.
Early in the process with my in-laws, we told them we'd visit on Monday evenings to take them to dinner (or bring dinner) and out to the grocery store, and could bring them to appts that were scheduled on Monday afternoons. We explained how to have groceries delivered (MIL literally went to the store daily before her license was surrendered). Took a LOT of phone calls and complaining but we were not going to rearrange our lives to set up an exact replication of how they used to live.
Anyway, hope that is slightly helpful -- for me, writing stuff out and then pulling useful stuff out of the brain dump is most useful for planning. As for meetings, clarifying and coming to agreement on goals (and recognizing what can and cannot be addressed during limited time frames) is the best way to make sure it's useful.